I got a call this evening (Thu 24th) from the surgery asking me to come in to discuss my recent 24h tape, saying it's nothing to panic about but my GP has cleared a slot for me tomorrow morning 'just to be on the safe side'.
I am not panicking about the ECG results, but about what questions to ask the GP! It's a 10 min slot in a busy GP's day. (She's a great GP).
As I recently had a tech disaster and lost all my documents (which included all my prep for EP, all my notes &c regarding my AF and related health stuff), my mind has just gone blank!
So far, my questions for the appointment are: what's the problem, and what does she suggest?
I have no notes, (see above), a poor memory, and I panic when I have to communicate about something important, and often make a hash of it. Aargh!
I'm just wondering if anyone might have any ideas re sensible questions to ask.
I'm trying to identify issues that it could be, in order to prepare.
Some issues already identified on my Kardia reports, that might have shown on the ECG, include:
runs of ventricular ectopics with multiple morphologies, (but... I've seen Prof. Schilling on YouTube saying that ectopics (including ventricular ones), even if you have lots of them, are nothing to worry about in someone with a normal echocardiogram. So I don't let it bother me).
Or, my pulse could be going too low during sleep, as in daytime I have bradycardia, sometimes in the 40’s (since being on low dose bisoprolol).
I have been on bisoprolol since July (only 1.25 dose but it flattened me as I already have very low BP and other major problems with fatigue).
Despite the down-side, there are two benefits I get from bisoprolol. One is that my sleep is (generally) less wakeful, and the other is some (imperfect) relief from the very high pulse rates I get from PoTS (Postural Orthostatic Tachycardia Syndrome).
I am hoping she doesn't tell me my pulse has been going too low at night and I'll have to come off the bisoprolol. Now that I am acclimatised to bisoprolol, I dread changing it because the PoTS is awful.
If she thinks of a different beta blocker or a calcium channel blocker, I am unprepared and too exhausted to look it up and absorb the info.
Well this is probably a mess, and I'm sorry about that, it's because I can't think straight (bisoprolol and PoTS).
My question is, are there any sensible questions I have overlooked?
Thankyou for reading this.
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Boombiddy
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Well that is a post to receive late on a Thursday night.....no pressure there then!! First things, first....naturally and understandibly you are in panic mode, but that aint gonna help...is it? Are you able to have someone with you when you see the Doc, coz methinks you will be so busy thinking about the questions, the chances are you might not remember the answers, and that would not be good.
Clearly, you have a good understanding of what's going on and have established a number of points you need to raise, but I suspect there may be a suggestion to refer you to a cardiologist and in truth, an Electrophysist (EP) is likely to be more helpful. I think the important thing is to (calmly) listen to what he has to say, and then listen to his/her suggestions, but I think you should ask about a referral. Also, you can always go back and see him again once you have had a chance to digest what you have been told.
I know all this is not easy, but the important thing is to have someone you can rely on to be with you. I really do not think you should expect to cover everything, and hopefully the Doctor will clarify your position and be in a position to make you aware of everything you need to know.
Apologies for "lecturing" but I am only trying to help......best of luck for the morning....try and get some sleep, and pllease let us know how you get on......best wishes, John
Thankyou FlapJack, I really appreciate you answering.
No there is nobody I cd ask to go with me, at this late stage.
I didn't get the call til early evening and at first I didn't think to consult people here, as I haven't been able to participate much recently, as I am so confused.
The GP has referred me to an EP who also understands the autonomic nervous system dysfunction (PoTS), but that appt is not until next July.
She had hoped to have the 24h tape results to include in the referral letter, but they were slow in coming through.
She also wanted to make sure there was nothing to be concerned about while waiting for the EP appt. (She's a fantastic GP).
Maybe I cd suggest she asks the EP's advice in the meantime?
I had intended to contact the EP's secretary once I received the appointment letter, to put myself down for any cancellations, but I feel very unprepared since I have lost all my detailed prep, so I think I will have to wait until I've done it all again.
(Ever since the build-up to the big AF bout in July in have been quite low-bulb in the brain department with bouts of worse confusion, but because I have a natural fluency and good vocabulary I don't think doctors see the problem. I seem to be saying one thing fluently when I mean to express something else entirely, so I am struggling but look as if I'm doing fine and saying what I want to say).
Sorry, getting whiney, will stop.
Thankyou and I didn't feel lectured, I feel very grateful for your caring answer.
methinks you will do just fine.....lot's of helpful advice from folks will help you .... don't forget to let us know how you get on.....good luck, John
It's just the summary page of the 24 hr ecg, which will give the nub of the important findings. The full report is often 10 pages or so and includes more detail.
Hi. I have no further suggestions but just wanted to say Good Luck for tomorrow. Over the last 2 years I have been called back in to see the G.P. following dodgy blood test results. Each time I go into panic mode ( panic, being the thing I do best ) only to find that when I am tested again in 2 weeks time , they have returned to normal. This is probably the G.P. actually being conscientious and doing the right thing. If you dont feel able to digest it all while in the surgery, why not make another appointment for a few days time ( if possible ) to give you time to think.
Thanks Jane, it is so kind of you. I will go but take on board what you said, maybe make another appointment next week to help me absorb it all.
She is part-time and very much in demand so it must have been hard to clear that appointment for tomorrow, yet she did it, so I am also just dying of curiosity now...
B x
Ps sorry about your panic-inducing blood tests! So glad if your GP is being conscientious and doing the right thing. Hope you are keeping well, or better than expected. Xx
This has just happened to me re:blood test results.Convinced I had liver cancer I found that my score had merely gone up two points to the top of the range of 40 and it didn't reflect my liver function..more my sugar levels which are on the brink of Type 2!As you say overconscientious gp..which is no bad thing as he was the one who was fastidious about monitoring my Digoxin for AF.All is not necessarily what it seems my friend.I think being an AF sufferer makes you more sensitized to things...fight or flight mode bult in!!
Can't offer more to the helpful advice and comments above, so will just say I hope it's an interesting appointment. Great that something worth discussion has been thrown up by the monitor as so often one's heart does nothing all day and then goes bonkers after you've handed the gadget in. All the best!
A good GP is worth his/her weight in gold and I hope you have a good consultation with yours today. I feel like Rellim - at least the monitor may have indicated something which can be addressed.
Ah Boombiddy - too late to give you any advice but I really hope your appointment went well. As someone else pointed out, you don't have to cover everything today, but can make notes and then go back for a further appointment. One thing that is interesting - my daughters keep pushing for me to use the diary on my iphone where we can all communicate with each other but I am loathe to get rid of the old hard copy where I keep notes of absolutely everything (and my diary is often a point of reference for the family, too!)
Thankyou so much for asking how it went. I've bolded the 'short version' facts in case it's too much detail to skip through, (as I have left detail in for anyone who might encounter these issues themselves).
I went to my GP and this is what she said:
It is not necessarily anything to worry about but she is being on the safe side:
My 24h tape showed a self-limiting run of ventricular tachycardia, only 11 beats long. Aka a 'non-sustained VT'.
She told me what she has already done:
Because my EP appointment is so far off, and this is outside her expertise, she has consulted a local cardiologist to see if this is something we should be giving attention to now / if I need to been sooner.
(There is one local cardio that she rates very highly, and I think he's the one she mentioned whose wife is a consultant EP).
She had researched around it herself.
What she did today:
She gave me a copy of the whole report (I didn't have to ask!)
She gave me a copy of her letter asking advice from the local cardio.
This refers to her referral letter to the EP I will see in July, (and I have a copy of that already so I know that is really thorough and detailed and will be helpful).
She gave me a copy of some info she had on Non-Sustained Ventricular Tachycardia (NSVT's).
She gave me detailed instructions on what to give attention to, what symptoms to call for help for straightaway if/when I get them, and what symptoms to get a GP appt for.
Options for the VT's include beta blockers (which I'm already taking), so she has not changed that.
An initial skim-read of the 24h tape report:
Says my highest heart rate was 140, (at 6.53 pm).
(Yet it also says my NSVT'S were at a rate of 187 bpm!)
Lowest 50 (at 05.19). Yet it also says my lowest was 39bpm (at 03:39).
The NSVT's were not (as I expected) during sleep but at 5.45 pm (no symptoms!)
"Remainder of tape is predominantly sinus rhythm. PR interval within normal range..."
"Advice/Management plan: Advice cardiology consultant review for rhythm management. Next Pathway: Discharge from service. Referral to hospital".
This was a very unsymptomatic 24 hours for me so I was surprised that anything showed up on the ECG, and very grateful to my GP taking care to not just 'park' me once she'd made the EP referral, but make sure I have a safety net in the meantime.
I think this is an exemplary GP. What do you think?
Is there anything else you would have asked in the same circumstances?
Ps: she has been wondering (she said it is only an educated guess and we need to know more), if maybe I had some ischaemic damage. If I understand/remember right, this wouldn't show up on the echocardiogram.
I am wondering how they would test for it, and what could cause it.
I'm wondering if the chronic very low BP (PoTS autonomic nervous system dysfunction, with hypermobility type Ehlers Danlos Syndrome) has anything to do with it.
(With PoTS you can get a heart 'clap' (painful!) where the heart has done a beat without adequate blood in the chambers, because of the very low blood pressure. I've only had a couple of these because I have learned to manage the PoTS).
Anyway, it's got me thinking... Does anyone know off-hand how ischaemic damage is tested for?
Myocardial ischaemia now tested for by assessing coronary arteries with ct angio, gadalinium MRI or similar. Previously exercise ecg was used, but less so now.
It maybe a private appointment would be worth considering .
An echocardiogram doesn't show ischaemia, but may be useful to assess for other possible problems such as heart failure.
Interesting and useful discussion, clearly, Barbara. I can't offer many comments at all, except to agree that your GP is very thorough, helpful, attentive and all that you would hope for. I think questions should perhaps be addressed when you are referred as she seems to have covered a lot of ground already and given plenty of advice - which seems well absorbed!
I think you are fortunate that your 24 hour monitor was so revealing and it is now known that you can have 11 seconds of ventrical tachycardia. Self limiting sounds good. How many people have ECGs that record almost none of the things that sometimes go on?
And I had just watched Prof Schilling on YouTube saying how 24h tapes were generally a waste of time unless the symptoms were at least once daily, so I had no expectations.
I hope the example of my GP here will be useful for anyone who needs to know what to expect of their GP in this situation.
I have to have regular exercise stress tests to check that I have no ischemic heart disease so that I can continue with flecanide so that is one way of testing for it .I am sure there are other ways. Glad you had a good session with your G.P. x
In case anyone in years to come does a search for non sustained ventricular tachycardia or NSVT and arrives here, here is the link to the article my GP gave me, which you might find useful:
Well it sounds like your GP is one in a million......you are very lucky to have someone who goes the extra mile. I hope you see a specialist quickly and that they can put your mind at rest so that you can move forward.
Your GP is a diamond I agree. Most things have already been said but one thing which leaps out of the page at me is your lack of knowledge of the event. This is so important when people are considering stopping anticoagulants saying they no longer have AF. We frequently have events of which we are not aware. A good reminder there so thank you so much.
I am, though, a bit preoccupied with the run of VT. I keep thinking 'Nah, it's one isolated run, don't worry', then 'But how often does anyone get one isolated run of anything?' And 'will it progress into longer runs?' And 'since they've been asymptomatic will I even know in time if it does?’ (Croaks mid-senten...
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So what does bisoprolol do?
The correct diagnosis?
Ectopics or Atrial fibrillation (?)
Do I have ectopics or AF?
Flecainide and SVTs/Ectopic burden
